So here’s why I mention Ehlers-Danlos in my posts.

Ehlers-Danlos is a genetic tissue connectivity disorder. Belinda has several markers for this. I read back in the hospital that one thing that can happen to Ehlers-Danlos patients is super-slow esophageal emptying. So it makes me wonder. Does Belinda actually have Achalasia type 2, or does she have Ehlers-Danlos and that’s causing slow emptying? And if it is the case, is the POEM procedure still the right thing to do?

The POEM procedure involves a doctor going down her throat and making incisions all around the lower esophagus so it won’t open and close anymore with eating. It will just be open all the time. It’s apparently the best thing for achalasia, but it brings with it other problems. And it’s permanent. So obviously I just want to make sure. But when I ask, I either seem to be blown off or they don’t understand what I’m asking.

I decided to wait until we get the results from genetics to push it, but I know I have to. I just want to be understood, heard, and answered to my satisfaction.

I know some doctors don’t like it when you look stuff up online, but I’m not stupid. I just need some clarification. I don’t think it’s too much to ask.

This picture is from Feb. 22, from the OEC Youth Tour Banquet. She sure doesn’t look sick, does she?